Sick and Scared

[jensrichard77]

I’m so sorry to hear all this and I wish that I could support you with more that my best wishes.

I also like to thank you @tired_programmer for sharing. This tribute to the trustworthiness of the forum and the community.

It also hurts me to hear about these problems around the world where people don’t get their proper help because of finance.

Best wishes from me to all of you out there.

[sushy00]

Sorry to hear that. I always say health is the most important thing ever. As soon as it is taken away, you suffer gretly. I personally suffer from IBS and misophonia. Both are not deadly, but have had severe impact on my life (and doctors/people in general tend to take it not seriously, awesome...).

[unknown_user]

I always say health is the most important thing ever. As soon as it is taken away, you suffer gretly.

Mmm... no. In my opinion, the most important thing ever is the ability of your brain to produce serotonin, dopamine and - most important - endorphins. And you also should have a ways to kill a pain, of course. If both are possible, you can be happy (well, theoretically).

[Cavechan]

I'm so sorry to hear about your ongoing medical issues. My mom also needs an expensive medication for an ongoing problem and the best they could do was give her a coupon for a good discount but it was only for so long. I don't know if she is still using it or not though haven't talked to her about it recently.

I don't really have an ongoing issue. My health issues have been from when I was trying to get pregnant and that hasn't gone well at all. It caused a lot of emotional, mental, and physical pain. I don't even know if I really want kids anyway so I've given up. It's much less stressful.

Up until last summer I didn't know chemotherapy could be used for things that aren't cancerous. Apparently, it can also be used for removing embryo cells? I guess? from where they shouldn't be. I got to learn that the fun way. Luckily one shot was all I needed.

[TopJimComics]

I posted in another forum about this, but I have FSHD (facioscapulohumeral muscular dystrophy). It's a degenerative muscle disease that's inherited yet somehow I was a lucky "spontaneous" case. Unlike DMD, it doesn't kill you when you're young, but it affects skeletal muscle. My shoulders are incredibly weak and my arms are getting weaker. One side of my face is weak, so my expressions are weird and I can't whistle. The most recent affect is that I have foot drop in my right leg, so walking has become harder. I think the rate of occurrence is about 1 in 10,000.

[vfinnigan]

Chemotherapy in lower doses can effectively suppress the immune system, which is why it's often prescribed for rheumatoid arthritis, lupus, and similar ailments.

Sad to say it's also often used to remove ectopic pregnancies. I say it's sad, because in most cases, the woman would prefer to keep the baby, but because we can't save them both with our current technology, it's very often a good idea to have grief counselors on standby.

I can't get pregnant again anyway, so it doesn't matter to me so much, but treating this illness with chemo is a lot harder for younger ladies who would like to be able to have a child. I am sorry for what you'd been through. Also, I lost a baby at ten weeks, but not due to ectopic pregnancy. I just got an especially nasty spider bite which got infected. So I'm especially sorry about what you've been through.

[vfinnigan]

Oooh, yes. Brackets (or braces, as we call them here) are also a major process. I've had them. My husband had them twice. And my son has the opposite problem you've got. Two of his front teeth are missing and he has some pretty bad misalignment. He's had braces twice and has dentures to stand in for those missing teeth until he's old enough for implants. We've been working on helping manage his dental/orthodontic problems for going on ten years now. And while insurance has covered all that pretty well, the only one in our area who does implant dentistry is out of our network, so my son can't get covered for that until he can get his own insurance.

As for health being important, I kind of agree with Sushy on this, but that's because my daytime job depends a great deal on being physically healthy. Without it, I can't work, and I love my job and my patients.

[BlueDragon]

I am so sorry to hear the struggles you're facing! It's incredibly frustrating having something that can possibly help you be just out of your grasp due to bureaucracy. If it's something this rare, it's not like your doctor's making sh*t up to dole out pills. Our system in the US (I'm assuming you're in the US) is so messed up and needs a major overhaul (yeah, I'm rehashing what tons of people have said.)

I really do wish I could help in some way. When I was a kid, Mom had ulcerative colitis so bad she had to have her large intestines completely removed, and there was a period of time between the "rehook" surgery where she had a stoma and a...I think it was "g pouch?" She was in so much pain, and I was like in 3rd grade...but we tried to help the best we could. No one ever understands her dietary issues now and her current doctor apparently doesn't understand the concept of digestion issues with no large intestines.

It was hard trying to explain the whole thing to people who didn't know what it was, and what's worse is the State's insurance company folded during all the operations and my parents got stuck with the bills. It took them a long time to crawl out of debt, and they really still haven't.

Long and the short, I wish there was more besides voting that I could do to help (I have no money myself.) I hate it when people trivialize someone's suffering just because it's rare and they haven't heard of it or don't understand the specifics. I truly...truly wish the best for you in the future, and hope you're able to get what you need without incurring massive amounts of debt.

[Kura]

I have 2 rare chronic diseases.

I also have Lupus, which in it's rampage of my body triggered and started up another autoimmune disorder called Sjogren's Syndrome, which in IT's rampage of my body caused Arthritis (which is common but still fking frustrating cause I already have to deal with the other 2, I don't need another).

I've been on and off meds and trying all kinds of things for YEARS. One of the most frustrating things about constantly switching meds is the fact that a lot of them I have to be on for a least 3 months before the doctors can figure out if it's working or not. Currently on 7 different pills I have to take daily (sometimes 2 - 3 times a day) and one weekly injection and I hate it. (which is actually a lot less then what I used to have to take and also doesn't include vitamin supplements)

In addition to all the meds there's an over abundance of doctors appointments. One of the things sjogrens syndrome causes is dry mouth because I can't produce saliva, saliva is what helps fight bacteria and keeps your teeth clean. I have to go to the dentist monthly to get my teeth repaired because they will rot or break so quickly.

One of my meds has a chance of giving me liver failure. So I have to get monthly blood tests done.

Another med has a chance of permanently damaging my vision, so I have to go to the eye doctor every few months.

One of the meds I'm on to help with the nausea from my other meds is apparently not always in stock, so sometimes I can't take it. This medication causes me to go into extreme withdraw when I'm not taking it. Which is a painful, horrible and worthless experience. Throwing up from the increased nausea and migraines so bad that I usually end up locking myself in the bathroom to avoid all the lights and sounds in the house so I can try to sleep in the bathtub.

The only advantage I have compared to many other people that have these disorders is the fact that I live in a country with free health care. So I don't have to pay for any of these medications or doctors appointments and as a result avoid the crippling debt these diseases are known put people and their families in.

The feeling that there is NOTHING that I could do to fix this / make myself healthier or that there is nothing I could have done to prevent it just makes me feel absolutely helpless. I don't like feeling like I can't do anything to fix what's wrong, and the fact that things will be like this for me for the rest of my life is painfully depressing and constantly keep me up at night. Combine that with the thoughts that I take so many meds and resources to attempt to keep around when I contribute nothing really important to society, I'll start to get thoughts/debates in my head on why at this point I'm bothering to keep being alive.

[Maps]

I do not relate to this, but that sounds dreadful. I hope you quickly find something that works so you can feel better. And don’t stop searching!

[vfinnigan]

Yes. G-bags. I've had to change them in my line of work. I've also done a bit of ostomy care, so I know what you're talking about.

I have 2 rare chronic diseases

Yes indeed. Lupus does indeed come with compound problems. I don't have full blown Sjogren's, which is a small blessing, but the chronic dry eye has done permanent damage to my vision, so now I have to wear special hard contacts as well as reading glasses for most day to day stuff. Same with the antimalarials. I went off of those at the first sign of retinal damage.

What I do have along with just plain ol' lupus is... fibromyalgia and ankylosing spondylitis. So basically, everything hurts, even my hair. And my spine is slowly fusing.

The cost of all my medical care is a bit scary, especially since I've got two kids in college now and would like to help with their tuition, food, housing and such. But I'm most frustrated about being made to wait. Because as I've learned in EMS, delayed medical care in many cases might as well be no care at all. And I can't stand it when a bunch of businessmen or bureaucrats who've never met me and have no medical credentials think they can second guess and override me and my doctors.

And I also share your hatred of feeling helpless. My job, when I'm able to work, anyway, helps me cope with that. Because if I can't make myself feel better, making someone else feel a little better helps me cope. It's why my rheumatologist, who also has lupus, is still working and why she thinks I shouldn't quit my job.

[Wumbl]

My mother has a neurological disorder that still hasn't been given an accurate label. It causes her terrible migraines and headaches, and messes with her ability to think critically/logically a lot.

She's deteriorating, having migraines more and more frequently whenever she encounters ANY stress. On top of that, she's becoming paranoid and erratic. She can't handle confrontation without getting very, very emotional and she can't form reasonable opinions half of the time.

She's not even 40 years old yet and she's basically wasting away mentally with some kind of neurological condition that the doctor doesn't know how to treat. She's been in for all kinds of tests and scans. It's hard to work with her brain, too, because she's hormonally intersex (has a high level of testosterone compared to the normal amount for women) and as a result it's hard to understand her brain's hormonal levels.

It's scary seeing her get sicker over time. She's become very difficult to handle sometimes, because her migraine episodes cause her so much pain and suffering. The fact she's starting to develop the mindset of a conspiracy theorist doesn't ease my nerves any either.

I also have PTSD that's very erratic. I know what it's like to have a chronic condition that causes you a great deal of physical and mental strain. Sometimes my triggers are so weirdly specific, people will say a normal phrase or word or even just touch me in a certain way and I'll have a very exhausting and sometimes painful panic episode.
It's caused me heart palpitations before, as well as blunt force injuries from losing muscle control... I also crash really badly and become very sick sometimes after a panic attack.
Whilst PTSD isn't that rare it is unbelievably painful and the stigma that "only veterans have real PTSD" harms me too because it makes me afraid of being judged all the time.

[vfinnigan]

Yep. I've got PTSD too from nearly dying in the line of (non-military) duty. And my biggest triggers are extremely specific - the make, model, year, and color of the car that hit me.

I also enjoy target shooting, hunting, and (when the lupus doesn't lock up my drawing arm) archery. And whenever a veteran commits a crime, the media immediately "diagnoses" said criminal as having PTSD, whether or not he actually has it. This has led to people believing that little ol' me in my wheelchair who only happens to own firearms is going to go all Rambo on people and commit mass murder over seeing a tan car.

I work with a lot of people who have PTSD in an informal support network, and that stigma has made life very hard for all of us. By the way, welcome to the Sisterhood of Sleeplessness. And don't worry. It's a co-ed sorority.

[Wumbl]

It's really good to talk to someone with a similar struggle... Because it becomes hard to even mention trauma without somebody misunderstanding and being totally rude about it.
I have PTSD from an abusive parent, and unfortunately RTS as well. I can be triggered by a phrase one of my abusers said during a violent situation, or a flavour can bring back a memory of being force fed, a sudden raise of voice can get to me or even the wrong kind of physical contact can immediately get me. I tend to avoid physical contact on specific areas like wrists and neck, except with those I really trust. Even the most harmless touch can be really anxiety inducing for me, since my body immediately responds with fear that I'll be hit or dragged or worse.

The stigma that only combat violence can cause PTSD is tired and it only puts down people who suffered abuse, been attacked or even just accidentally injured. Trauma can come from anything that really shakes you up and I wish more people understood that.

I totally dig the found family vibe that name has, too. Its great to see people making a difference for each other.

[minerrale]

Hey there other PTSD survivors! I knew I wasn't alone. (I'm actually writing about that, to help with the stigma and all).
PTSD, while far from deadly and overall liveable, came with a bunch of other issues for me. I have allergic reactions to water on my skin (including sweat, tears, rain...), endometriosis, anxiety disorders, sciatica, mood disorders, social phobia, depression (of course) and other minor stuff that makes life hard without needing particular medical care.
The stigma is real, the guilt is real, existence is pain, but hey I'm alive, might as well try and make the best of it, right? Even if it means I can't spend more than 30 minutes in bus or train, need to wear earmuffs even in summer and can't go to the movies. Who needs the movies anyways, I read books.

[vfinnigan]

I've also come to the conclusion that enough people call me a burden, I don't need to join them in believing that. However expensive hanging around in this mortal coil may be, I can't afford to let them influence me. Because people who whine about my disability burdening them when they can move all four limbs without pain or stiffness have no idea what "burden" really means and should learn some compassion.

[Zaboem]

Venting is necessary from time to time.

[Kura]

Yeah, those types of people can get really depressing to deal with, I run into a lot of them here because of the way the healthcare system works, but they really love to give speeches about how I'm and people like me are 'stealing their money' especially when they get into the debate on how chronic illnesses are just a 'constant drain on healthy people because they will not get better, and should not be included in health coverage or should be 'humanly put down' .... this suggestion bothers me so much cause it's not based off the idea of "helping to end the suffering" or anything like that (which is a whole other topic of discussion), it's suggested as an option because "They cost too much and I shouldn't have to pay for them."

Another frustrating thing is how hard it can be to enjoy having 'good days' which are VERY FEW AND FAR IN-BETWEEN TO BEGIN WITH (and I get less and less of the longer I live). Sometimes, you just hurt less than normal, or you can do a few more things than you usually can. But sick people are apparently NOT allowed to have good days, because as soon as we do we start getting harassed about 'oh your not as sick as you're always saying you are' or 'so you were faking it the whole time.' it just... feels like if you're sick you're not allowed to have a day where you don't feel as bad as you usually do without being shamed for it????? and it's just weird...

Also very sorry I have not been responding much in this thread, even though venting is great I generally have to be careful when I talk about my health cause in more than just general details, if I do it too much the realization of my situation just gets heavier and heavier and I get more and more depressed. So I try to be careful about that.

[vfinnigan]

My day job is in hospice care. One of the ways it helps me cope is by reminding me that I'm not dying yet and that there's still a lot I can do to help others. (Take that, people calling me a burden! I ain't going anywhere yet!)

[vfinnigan]

Done all that. I now have a CPAP to keep me breathing through the night. The only side effects of that (besides making a major project out of getting ready to sleep) is an imprint of the mask on my face.